(UPDATED SEPT. 1 - SUNY Geneseo women's basketball player Lea Sobieraski is back for one more season with the Knights in 2015-16. Suffering from a life-threatening liver disease during her sophomore season, she received a liver transplant and made her way back to join the Knights during their run to the Sweet 16 during the 2014-15 campaign. She was also voted to the Allstate/WBCA Good Works Team, recognizing student-athletes that have "demonstrated an exemplary committment to community service" as well as the 2015 recipient of the SUNYAC Award of Valor. The following feature appeared in the RAA Newsletter on February 10, 2015.)
By Tim Volkmann
Lea Sobieraski’s eyes are as deep a blue as the SUNY Geneseo basketball uniform she wears. When she looks at you, it is hard to believe that there was a time not long ago the sparkle in those eyes was drowned out by a yellow tint associated with a rare liver disease that not only kept her from playing the game she loves but almost took her life.
Lea’s is a story that illustrates how frustrating the need for an organ transplant can be, how vitally important organ donation is and how the gift of life came full-circle in getting her back to playing the game she loves.
December 4, 2012
Right in the middle of taking a Spanish final exam, Lea’s phone wouldn’t stop vibrating. Two days after visiting the Student Health Center with what she was told was likely indigestion, the message instructed her to get to the emergency room ASAP. She was supposed to get on the team bus later that afternoon for a basketball game at conference-rival Oneonta, but instead was rushed to the hospital in her hometown of Lockport, N.Y. after she was told she “had free-flowing fluid in her abdomen.”
After spending a week in the hospital that included having over seven pounds of fluid removed, she and her family were first introduced to the term Wilson’s Disease. One in 40,000 people are born with a liver that doesn’t produce a certain protein that helps digest the excess copper in the food (such as chocolate and shellfish) they eat. Over time, the copper slowly builds up in their system until it causes liver or even nervous system failure.
Lea was initially told the cirrhosis in her liver was so bad, it looked like she had the liver of a 60-year old alcoholic.
She was referred to a specialist at Strong Memorial Hospital in Rochester, N.Y., who confirmed the initial diagnosis. Lea and her family started down the long and uncertain road to find a new liver.
Organ donation is a state-regulated process and each state maintains a list of those that have applied to receive one. While the demand is great, the percentage of people signed up to be donors is low, especially in Lea’s home state of New York which has one of the lowest rates in the country. Specific to liver transplants, a patient’s MELD (Model for End-Stage Liver Disease) score determines how high on a liver transplant list they are. Using a scale ranging from 0-40, the higher a person’s MELD, the higher their priority is for the next available liver. Typically, once a MELD gets above a 20, a patient's need for a transplant starts to grow critical.
Another option was to find a suitable candidate willing to donate part of their liver. Both her father, Michael, and mother, Wendy, immediately wanted to have a blood test to see if either was a match. Driving home from the hospital, they searched ‘local blood drives’ on their phones and found one that was actually going on not far out of their way. By month’s end, they had learned her father was the same blood type and the family immediately began exploring the process of donating part of his liver.
If deemed healthy enough, a donor is able to give over half of their liver as the organ mostly regenerates itself over time. Following a month filled with numerous intrusive tests, Michael was cleared to have one final check completed. A special scan of his liver was to be sent to a clinic in Germany that had the ability to split the image into thousands of pieces and verify every part was healthy. In the meantime, he was also subject to a mandatory two-week ‘reflection period’ to fully contemplate his decision to make the donation. Despite Lea’s condition worsening by the day, and his insistence to forego contemplating anything any longer, the family had no other option but to wait.
If Lea’s father wasn’t deemed a suitable candidate, the family had a secondary plan. Those seeking a transplant can be listed on multiple databases as long as they can establish residency and be in each state quickly, due to the short shelf life of organs. (Apple CEO Steve Jobs was listed in five states before receiving a liver transplant. Of course, having a private plane at his disposal gave him the ability to be anywhere in a short amount of time.) Lea’s uncle in Nashville, Tennessee lived a short ride from Vanderbilt Hospital and relocating would increase her chances of being eligible for a liver. While a MELD score of 36 was needed to put someone at the top of the donor list in New York, a score of 31 would put a candidate at the top in Tennessee.
As it turned out, relocating never became necessary. Nor were the German liver scan results.
Paying It Forward
Staring in the face of what is typically unfamiliar territory for most, Lea’s family was actually no stranger to the circumstances surrounding organ donation. Lea’s biological parents had separated when she was younger and her mother remarried in the summer of 2005. Less than three months later, her new stepfather, Dan Lanfear, slipped at the top of the stairs in their new house and hit his head violently on the way down. Less than 24 hours later he was pronounced brain-dead.
The family was told that, even if he had fallen outside the front door of the hospital, his injuries still would have caused him to lose his life.
In the midst of such a tragedy, Wendy and Dan’s family was presented with another option.
“While he wasn’t registered, they asked us if we thought he would have wanted to have his organs donated,” recalled Wendy. "We made the decision to do it and I eventually received a letter that explained how everything that was donated had gone to help almost 50 people.”
Now, 10 years later, Wendy and her daughter had arrived at the other end of the spectrum.
Playing The Waiting Game
Following Lea’s diagnosis, the waiting began and her family’s frustration slowly began to mount. Over the next two months, Lea was subject to having her blood checked at least once a week. She was also prescribed a medication that would either reverse or slow the effects of the disease. But one of the side effects was spending most of her days uncontrollably nauseous.
“The hardest part was sometimes the bloodwork would be good, the next time not,” recalled Wendy, a high school special education teacher. “You had to be sick enough just to be able to get on the transplant list, but she was in such rough shape there wasn’t much she could physically do.”
Lea tried to come back to school for the start of the semester, but her condition kept getting progressively worse. Bouncing between home and extended stays in the Strong Memorial Transplant wing, she lost count of the multitude of blood transfusions as well as the myriad of liver and bone marrow biopsies. But the pain is something she’ll never forget.
“The bone marrow biopsies were the most painful thing I’ve ever had to do,” said Lea. “I would lay on my stomach and the doctor would put all his weight into pushing a needle into my back to suck out the bone marrow. And there wasn’t anything they could give me for the pain. I have a pretty high pain tolerance, but those were excruciating. I didn’t expect it to be that bad because nobody ever really said anything to me about how painful it was going to be. Now I know why.”
During one of her regular visits to the hospital for a check-up, Lea’s doctor declared everything was “normal” and he’d see her again in a month. During their conversation, he also revealed that he had diagnosed an 18-year-old girl that had recently come in to be evaluated with same rare condition. However, within three days of her visit, the girl’s MELD score spiked from 10 to 40. She became so sick, she shot past everyone already on the transplant list. And she got a liver.
Lea was frustrated for sure.
“I felt like I pretty much had to be on death’s door to get a liver. I was kind of hoping I could just get sicker so I could get one. That is how bad it was just waiting.”
The following Monday, Lea walked out of her house on her way to get another round of bloodwork completed. Sitting down in the front seat of her black 2009 Chevy Aveo, she experienced a “white-out” for the first time. Her eyes were wide open, but she couldn’t see her own hand in front of her face. As the week progressed, Wendy noticed something was changing with her daughter’s appearance.
“I could see that her skin and eyes were turning more and more yellow every day. I remember the doctors talking about how that was something that happened after your liver shuts down.”
That Friday morning, Lea was curled up on her couch and the phone rang. The calm voice on the other end was her doctor and, having seen the results of her latest blood test, his message clearly illustrated that her condition had gotten much worse.
“Lea, you are going to be getting a liver, either today or tomorrow.”
She immediately called her parents.
“I remember my mom started crying because she wasn’t sure whether to be happy or sad. While this meant I was finally going to get a transplant, it also meant that I had gotten a lot sicker.”
Her mother and father raced home and the trio set out for the hospital.
Recalled Wendy, “When I got home, I was just in shock. I knew we had a long road ahead of us, but part of me couldn’t help but actually be kind of happy once the news sunk in because having her sick all the time could actually be coming to an end. I was just glad that we were moving on to the next stage and she had a chance to feel better.
“However, there was no knowing if she was actually going to get a liver in time. I didn’t want to even go there in my mind.”
During the ride, Lea experienced another white-out and couldn’t stop vomiting. She felt very weak and could barely keep her head up.
“I kept thinking that I needed to keep my eyes open or I wasn’t going to wake up.”
They arrived at Strong and a long afternoon of anticipation turned into an even longer night of waiting. Entrenched in the eighth-floor Intensive Care Unit, the family learned that Lea was number-one on the liver transplant list in New York.
She had a MELD score of 41.
“I never was scared or nervous. It never really fazed me because I always knew things were going to work out,” recalled Lea. “At one point, my mom commented that they were literally waiting for someone to die. In order for me to keep living, we had to wait for someone else to die.”
Early the next morning, the family awoke to rumors that a liver had become available. Lea’s specialist confirmed the news and informed them that two surgeons were on a helicopter making a beeline for New York City to check out its viability.
At noon, the family was told the liver wasn’t good enough.
Now surrounded by almost her entire extended family, Lea’s specialist returned later that afternoon with more news.
“He explained that the surgeons had taken another look at the liver in New York and were going to bring it back. My condition had deteriorated to the point that I was so sick, they had no choice but to try the liver because they didn’t know if another one was going to come along in time.”
Wendy also fought off letting any other negative thoughts into her head.
“There were people that we had gotten to know during our time on the transplant floor that went in for transplants and didn’t make it out of surgery because they either bled out, or weren’t strong enough. Patients at a certain point get too sick to have a transplant. I knew when they said she went straight to the top of the transplant list, it was pretty serious. I could see her going downhill.”
With two doctors and their precious cargo darting back across the state, Lea was prepped for surgery, which included having a complete blood transfusion.
“They didn’t tell me how awful it was going to make me feel. I had terrible chest pains and was sweating like crazy, but they wouldn’t let me have any water. My hair was in crazy knots too and I thought they were going to have to cut it all off when I came out. That was my biggest fear.”
Meanwhile, Lea’s family was in a nearby waiting room watching out the window as some small blinking lights far off in the late-afternoon sky grew into a streaking helicopter that landed on the roof right outside. The liver had arrived.
Lea was wheeled down a long hallway through a cordon of her family, which was now giving her high-fives and cheering as she made her way toward the operating room.
After saying her final goodbyes to her mother, father and brother, Charlie, Lea recalled coming to a stop in a big, bright, cold, metal room, filled with assorted tools and nurses milling about.
“While I was laying there, a whole bunch of people were carrying on normal conversations like this was something they did every day. That actually made me feel at ease.”
Nurse: “What kind of music do you want on while we do this?”
Lea: “Anything I can dance to. I love dancing.”
After braiding her tangled golden locks, a nurse put a cap over her head. And that was pretty much all Lea remembered.
A nurse in the operating room periodically called the waiting area occupied by Team Lea, and Wendy was able to get updates on her daughter’s progress.
We’re prepping for the new liver to arrive.
The old liver is out.
The new liver is in.
The procedure lasted over six hours and Lea was transported back to the ICU later that night. After a cursory ultrasound, the doctors discovered there was an issue with one of the arteries connected to her new liver. She had to be re-opened for another five-hour procedure.
“I had it easy because I was out the whole time,” smiled Lea. “My family had it hard because they were the ones that had to wait.”
One of the first things Lea remembers after the operation was hearing Charlie singing the words to one of her favorite country songs, "Wanted” by Hunter Hayes, next to her bed. Her little sister, Emma, also arrived after a six-hour drive from Rhode Island to be there. A basketball player at Bryant University, the family had actually watched her play on-line the night before Lea’s operation. Now, she was there in the middle of the night hugging her big sister as she slowly awoke from her procedure.
While the family later found out that Lea more than likely would not have made it if they hadn't found a liver in the 48 hours after she was admitted, Lea was only in recovery for 10 days before she went home, which was a far cry from the three-month recovery another Wilson’s patient she had befriended had endured. The doctors credited her young age and being in good shape from playing basketball for her quick turnaround.
“Lea is as tough as nails,” said Dr. Mark Orloff, the Chief of Organ Transplant and Hepatobiliary Surgery at the University of Rochester Medical Center, who took part in the operation. ”She was not going to back down and was fully prepared to get back to doing the things she loves, like playing basketball. There is nothing like seeing someone’s health restored so they can do that.”
While she was only in recovery at the hospital for a short amount of time, Lea was unable to return to school until the following fall as her health slowly returned to normal. While she couldn’t celebrate her 21st birthday like many of her friends, as alcohol is a no-no for liver transplant recipients, she was free to enjoy some of her favorite foods, including chocolate, once again as she was now cured of Wilson’s Disease.
A New Lease On Life
For the last three years, Lea has worked closely with UNYTS (Upstate New York Transplant Services) in Buffalo to help spread awareness of organ donation. She has done various talks at her high school and blood drives about her experience. The granddaughter of the Buffalo Sabres' legendary play-by-play announcer Ted Darling, she has joined with the hockey club to speak at numerous blood and organ donor drives aimed at spreading awareness about stories like hers.
“People really listen when she speaks, especially when she goes back to her high school,” said Wendy. “All the kids can relate with her being the same age and an athlete. It really makes kids start thinking about being an organ donor at a young age.”
Lea and her mom credit her women’s basketball teammates and coaches at Geneseo with being a big reason she was able to make it through everything. In the time leading up to her transplant when she was in the most pain, Lea was still welcomed to sit on the Knights’ bench whenever she felt able. Even when she was required to wear a mask over her mouth and gloves because her immune system was so weak, and she could barely stand up to slap a teammate’s hand, her basketball family not only never turned their backs on her, but sometimes even used her as motivation.
“A short time after she was diagnosed, Lea called me the morning of a big conference game and said she was going to be around,” remembered Geneseo women’s basketball coach Scott Hemer. “She surprised everyone in the locker room before tip-off and I am pretty sure every single one of our players could have ran through a wall if I had asked them to. We won the game by 30 points.”
Fast-forward to Saturday, Jan. 24, 2015 and Lea’s 23rd birthday. Nearly two years removed from daily bouts of getting sick and wondering if her life would ever go back to normal, she and the first-place Knights were hosting conference-rival Potsdam. Scoring eight points in 10 minutes of work off the bench, Lea and her teammates headed to the locker room to the cheers of the Schrader Gymnasium faithful with a 41-29 lead over the Bears.
Unbeknownst to Lea, some of the louder cheers that day were coming from four nurses in attendance that work in the Strong Memorial Transplant Wing that had come to watch a certain number 35 play – and celebrate her life. She wasn’t the only one that had trouble fighting back the tears.
“I was shocked, but it was a moment where everything kind of came full circle after seeing all the people that helped me during the whole process,” said Lea. “When I was at my worst, they all talked about how they couldn’t wait to see me back on the basketball court. And now, there they were saying, 'See, I told you so.' That moment was so incredible and I couldn’t really put anything into words as I put my arms around everyone in the middle of the floor. I started crying but it was such a great feeling.”
Lea has made multiple attempts to find out where her liver came from. After the mandatory one-year waiting period was up, she wrote letters that she gave to the transplant case worker to submit. She hopes to one day thank the family of the person that saved her life. In the meantime, Lea has applied to graduate school and hopes to one day earn an MBA and work in sports marketing. Or maybe go into public relations for organ donation.
"I hope Lea gets to meet the family of the person her liver came from someday," said Wendy. "I think they'd be proud of what she is doing with it."
Tim Volkmann is the director of athletic communications and media relations at SUNY Geneseo